Our Friend, Dinesh, has spinocerebellar ataxia type 3 (SCA3) and is 53 years old from London. Dinesh has faced ataxic symptoms since 2008 and was diagnosed in 2011.
“It has only happened to me once, about four years when I used to work. It was during my morning commute – I used to walk as I only worked a short distance away. When I was part way there, this guy was walking towards me. As he walked past, he leaned in towards me and whispered “you’re drunk” – then carried on walking.
At first I laughed to myself, as I thought it was funny. I had heard other fellow ataxians talking about this and never thought it would happen to me. However, as I plodded on my way, I realised that other people must see me walking in the same way, but didn’t feel the need to say anything to me.
This guy gave me the feeling that he was a co-conspirator, but one whose condition was due to inebriation. I was deeply embarrassed and frightened. I was so frightened, that as I walked home that day, I tried even harder to walk normally. Although, I found the quicker I walked, the more balanced I felt.
The likelihood of invoking another reaction was what was frightening. But, I must have been a site, as my arms were flaying at my sides as I steadily marched along.”
Dinesh is not alone in facing comments in the street. Let’s get ataxia out there and prevent these misconceptions.